World According to Matt

Where the Mysteries of Autism are Revealed One Story at a Time

Stories Blog

Sometimes it’s hard to think of my 28 year old son as an adult. That’s because he’s sweet and gentle and soft-spoken… when he speaks, that is, as Matt is mostly non-verbal. Matt is moderately to severely autistic and has continued to make great strides in all areas of his life. As I said, he’s sweet and gentle and because he can’t ask me for anything I’m the one that usually has the role of teaching. Teaching is more than showing someone how to do something – it’s also about pushing him gently to do activities he would not otherwise do. Matt doesn’t ask me for anything - not because Matt is afraid of me, but because he is afraid of hurting me by requesting time for himself - Matt’s fear is of hurting my feelings. The fear of hurting another person’s feelings keep him quiet when it comes to things like initiating an activity on his own. He would never ask to do something on his own – seeming to be perfectly content to just hang out with me – that’s how he appears. But appearances can be misleading – especially in autism.

I have had many roles since my son’s diagnosis – the super sleuth (figuring out what his behaviors and gestures all meant), the warrior mom (making sure he received what he needed from school staff), and the teacher. And many years ago, when it dawned on me that Matt could do many things on his own, I began learning the art of letting go – which as any good teacher will tell you, is a must if you want to see the child soar with the eagles. Letting go has remained the hardest of battles because I must fight against my own fears of the ‘what ifs’. It also requires me to investigate my son’s inner core, by asking in very simple ways, in order to discover what he wanted to do. Matt only had to answer with yes or no and I used his answers to slowly guide me to his center. What I found there was something very basic to all human beings – a desire to experience real freedom.

Simple gestures such as, “Would you like to shop alone today” were always met with a resounding “YES!” And so began the quest for independence and freedom. Matt started shopping in a different part of the store than where I was, staying home alone when I went to work, and many other such activities that brought pure joy – just simple acts of freedom. I must admit that it was always harder on me than it was on my son. I had to fight my own fear each and every time – the fear of the ‘what ifs’. Each activity was also a practice session for something much, much bigger – learning to live independently. Matt has now been living on his own in a small apartment in a complex for the elderly and disabled for eight months – and he’s doing wonderfully. Independence, defined as ‘free from support or aid’, is an ongoing adventure. I may still provide a small bit of aid and support, but he is doing very well on his own, because he has no fear of freedom. His road to independence has been a long one. It required practice in all areas and for many, many years; practice in asking questions, doing laundry, making his bed, cooking for himself, shopping for himself, saying “hi” to his neighbors, and of course, practice in being alone.

The thing is, is that Matt loves being alone much of the time. His love for being In charge of what sounds he surrounds himself with, which activities to do – from watching TV to playing video games, to drawing - without any pressure to converse, is easy to understand. His stress level drops when he is on his own and there’s a calm and quiet joy that fills the air around him when he is. But as I said before, Matt would never ask me if he could do other things on his own for fear of hurting my feelings - so it’s up to me to continually ask him and give him choices.

This is where trust comes in. Matt has to trust me to keep his best interests at heart – and he does. In trusting me I am under pressure to constantly seek out ways for him to experience the most joyous of emotions for Matt - freedom. Freedom, in this case, is defined as ‘the absence of constraint in choice or action’. Matt needs time to be himself, time to do what he wants without the pressure of conversation, without the fear of disappointing another human being. Time to just be . . . Matt.

That is a huge responsibility for a parent.

Step 1 - I must be able to get inside his head and find what he really wants.

Step 2 - I must be willing to set aside my own fears in order to give him his freedom.

Neither step is easy, but as the years slipped past I got pretty good at doing both. Let me fill you in on a little secret – my fears of all the ‘what ifs’ has never gone away. I have them every single time, but I push past them because I know in my gut what Matt really wants. I can push past my own fears because I have watched my son push past each one of his fears. Basically, I knew I could do it because I had a great teacher in my son, who showed me every day throughout his whole life what true courage really is.

So it should be as no surprise that after hiking various sections of the New River Trail that I found the courage to ask my son if he would like to hike the trail alone sometime – knowing in my heart exactly what the answer would be. The joyous expression that swept over his face told me I was correct in my assumption. “YES!” he announced gleefully, pumping his fist in the air for emphasis. He immediately wanted to know when and we made a date for mid-July. I had accomplished step 1. I knew he wanted to hike it alone. As for Step 2 – conquering my own fear - that was another story. Was I scared to let him walk alone? Yes. But I could see it on Matt’s face that me asking him – just asking him if he wanted to – had made his day. It was the right thing to do. I needed to just suck it up and deal with my own fear.

When the big day arrived it just happened that it was raining and Matt, hating the feel of rain on his skin, accepted the fact that we would have to reschedule. We chose the very next weekend – and it just so happens that yesterday was that day. At 5pm the temperature still hovered near 100 degrees and I thought maybe he would cancel the walk due to the heat . . . but he didn’t. He had been waiting months and had rescheduled once already – nothing could keep him from it again. He gathered his supplies; a NRT map, a water bottle, a hiking stick, his cell phone, and his camera and marched purposefully to the Jeep. Matt was ready . . . the big question now was . . . was I?

I had let my older son, Christopher, know of Matt’s excursion and since he lived nearby I asked him if I could stop by while Matt was on his journey. I would need distraction from my fear and Christopher was more than willing to help me through it. Plans were made, supplies gathered and as we made the drive over to the drop off area I was more quiet than usual. I glanced toward Matt. He smiled. “Whatcha thinking about buddy?” I asked. “Um…” He couldn’t find the words. “Are you thinking about your walk?” I asked, knowing that he would be more at ease with giving a yes or no answer. “YES!” he exclaimed. Enough said. Matt was too excited to converse, so we continued to ride in silence. Matt started fidgeting as the spot came into view and I knew in my heart that this was big – this was sooo big. He really wanted… really needed… to do this.

Matt hopped out of the Jeep as if he had been sitting on springs and immediately began putting his items in his pockets. I grabbed my camera and asked if I could get a picture of him before he started. He was happy to oblige – picture proof of a much needed adventure. As soon as I had taken his picture he smiled hugely, waved excitedly, turned on a dime, and started off. I stood there watching, unable to take my eyes off him until he rounded the first bend and disappeared from view. My mind was spinning. I felt excited and proud and certainly scared. As a parent I couldn’t help but run every ‘what if’ scenario through my head – ones I had thought of all week and new ones that just hit me as he disappeared around the bend: muggers and serial killers, snakes and bears, accidents, injuries, bullies…. The list went on and on and I knew it was time to head over to Christopher’s house for some much needed distraction.

I gave Christopher a big hug when I arrived a few minutes later . . . did he feel me shaking? No matter, he knew I was in need of distraction and he was superb at it. He kept me talking - about everything from the new kittens born in his yard the day before to the progress of his growing pug, Lucy, to home repairs and car accessories. Even with all the conversation deep down I felt time was dragging its feet. I glanced down at my watch and realized time was actually flying by - forty-five minutes had passed! I wondered, ‘Would Matt be at the bridge over the river yet?’ I picked up my phone and noticed I had no signal . . . moment of sheer panic gratefully followed by remembering Christopher had a landline. I grabbed up his phone and dialed Matt’s number. I had to wait through 2 rings – pure agony – before he picked up.

“Hi Matt!” I said happily – Matt was not to know how worried I was or he would immediately feel both guilty and sad. “Hi!” he greeted back. “Are you on the bridge?” I asked. “Almost.” He replied. Okay, that meant he was already halfway. Wow. The conversation lasted all of one minute but it was enough to let me breathe again. I stayed with Christopher another 30 minutes and then drove quickly to the pick-up location. I pulled into the parking lot, which had a great view straight up the path in the direction Matt would be coming from. I sat there staring up the path, then I read a few pages of my book . . . but I couldn’t concentrate very well. Seems it’s hard to stay focused when one is looking up every 30 seconds . . .

Then I spotted him – a tiny dot moving quickly and purposefully. I got out of the Jeep and waved my whole arm over my head and immediately received a confirmation wave. Matt was walking briskly and confidently and within minutes I could make out the grin – that smile from ear to ear – and knew that Matt was feeling wonderfully. Freedom was his.

The drive back to the house and then back to his apartment was one filled with my son singing loudly to the radio interspersed with giggles and smiles. He excitedly told me of a squirrel he saw in a tree, a women on a bike, and a couple pushing a baby stroller – but it was seeing the squirrel that had really been the high point of his walk. His body language and facial expressions conveyed huge amounts of information and I read each and understood each – he didn’t need many words to tell me of his hike and how wonderful it all felt. I knew. Once again my wonderful son showed me what it was like to feel whole, to feel free and independent. Words were simply not needed.

This beautiful experience - hiking a 3 mile trail alone – required a great deal of trust between us. One would assume that I mean I had to trust my son to hike alone, and I did, but the majority of trust came from Matt. My son had to trust me. He had to trust me to let him go. Matt can’t ask me for these simple joys, these moments of pure freedom to do as he wishes. He has to trust me to give him these opportunities, trust that I will fight my own fears and summon the courage to let him stretch his wings and feel free. He has to trust me to find the ways for him to experience freedom – something most people take for granted. If I didn’t seek out those experiences he would never have them - and that is the point of this long essay . . . it’s my responsibility to seek new ways for him to experience freedom.

It’s not just about what I can teach my son anymore – it’s about him teaching me and living up to the trust he puts in me. Trust – defined here as ‘having reliance on and confidence in the truth, worth, and reliability of another person’. He trusts me to get into his mind and figure out how to give him that one thing that makes him feel whole – a sense of freedom. It’s not enough that he is living independently, he needs his freedom too. Matt trusts me to figure it all out and in giving me his trust it seems my role in his life has changed yet again.

I have undergone the transition from super sleuth to warrior mom to teacher – but I am not simply a teacher anymore. It seems I have now become the bringer of dreams. My sweet and gentle son has entrusted me with this awesome new mission – an honor that makes all the ‘what ifs’ seem small and petty and inconsequential. So I will continue to slay my own fears, one day at a time - and I know I can do it because my new role is so much bigger, so much brighter, that no fear can withstand it. The definition of this autism mom is now ‘the bringer of dreams’.